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Carer: who, what, why?: Home

The long goodbye

Support offered for carers

Video Acknowledgments
Video Producer/DoP - Dan Sanguineti
Camera Operator/Assistant - Michael Watson
Video Editors - Peta Lioulios and Dan Sanguineti

Introduction to Module 3

Module 3 recognises the role of informal carers for dementia patients, who they are, where they are, and what role they play in enhancing wellbeing for patients.  It is now well documented that the role change and strain placed on informal carers can impact their own health and wellbeing negatively. The contents of Module 3 give insight into the toll that providing unpaid and often unrecognised care for dementia patients can have.  Health professionals need to include informal carers into their care planning and this added insight may facilitate the provision of informed, individualised care.

The theoretical knowledge gained from this module is enhanced by additional learning opportunities. The content of this module is linked to examples in Ed’s narrative, activities and learning strategies to better understand the concepts. 

About these activities & resources

The activities and resources for each module are suggestions. However, many of these are suitable for use with other modules, and you may choose to mix and match to suit your need.

Journal excerpt and associated resources for learning and teaching -module 3

Journal excerpt Points to consider & suggested activities

Journal Excerpt 3.1:

Tuesday, 5 February 2008
Mary to Dr Samantha Roberts.  Good Report.  Seven years since Mary was diagnosed (20 February 2001).  "Should be in Guinness Book of Records." Keep same medication and routine.  No further appointments.  Maree returned.

3.1 Points to consider:
Polypharmacy
Seven years since diagnosis– What does the research say?

3.1 Suggested Activities;

Discuss effect of long-term caring on the:
–primary carer
–family
–friends
–carers:
            1. paid
            2. unpaid

Journal Excerpt 3.2:

Wednesday, 7 May 2008
Mary more confused. More than usual today. Sleep [sic] a lot in chair in lounge this evening.  Had difficulty in waking her to take her to her bedroom. At 7: 30 pm she went to bed and went to sleep immediately. She called for a drink at 11:45pm. In very clear English she told me this: "I was coming out of a dance at Mullumbimby when a gentleman said, 'Excuse me, may I speak to you?' I said yes certainly.  He said that the band was only playing three dances and that five would be better. I agreed. He said that someone should tell...about it. I did my bit."

3.2 Points to consider:
–What should the Nursing Student know about the trajectory of Dementia/Lewy Body?
–What should the carer know about the trajectory of Mary’s disease?

3.2 Suggested Activities:
Mapping the trajectory
Review the trajectory
*trajectory should be reviewed on a six-monthly basis (date-dependent)

Journal Excerpt 3.3:

I looked at Mary and said five dances aren't many. Did you go to dances in Mullumbimby?  "Yes we used to go sometimes." "Was this before or were you dreaming it now?" "Yes I was dreaming it", and she grinned. "Ok I'll see you in the morning", and as I walked to my room Mary said, "Can I have the next dance?"

"It's a bit late", I replied." I think they have finished the fifth dance already." "Yes", she replied and fell asleep.

Saturday, 8 November 2008
Evening - Mary began to sing prompted by something viewed on T.V. She sang 'The last rose of summer' and we asked her to repeat it? We recorded her singing on our digital camera with sound.

On her way to bed she asked, as she often does, "where am I sleeping tonight?" We gave the usual answer: "In your own comfortable bed as usual."  Mary seemed satisfied.

Comfortably tucked into bed she unexpectedly asked, "Do I get paid for washing the sheets?" Maree, thinking quickly, jokingly replied "If you do a good job." Mary smiled and soon was asleep.

15 November 2008
Mary's mobility seems to be a little worse.  Today Mary has seen Lewy busily employed "collecting his gear in the family room and taking them [sic] away".  Later she explained that her tormentor was to be called 'Dr Who' in future as she didn't know 'who he was'.

Mary is spending more time concentrating on the invisible people who occupy her world and is resting and sleeping a lot more now. This includes sleeping longer in the morning.

3.3 Points to consider:
The role of reminiscing
–tools and techniques
–Reminiscing through
1. music
2. song
3. dance
(also, what music, songs, dance?)

–contemplate the benefits of reminiscing
–how might reminiscing keep the carer motivated?

The care approach:
–care/caring response

 

3.3 Suggested Activities:

Adapt and /or brainstorm help sheets to develop person-centred care plan

Use help sheets to help explain to Ed what is happening to Mary

Develop material for Ed

Journal Excerpt 3.4:

Sunday, 28 December 2008
Mary still having delusions during day. Can 'see' people in the house - men, woman.  Her frustration about not being able to 'do things and … alone. Two days ago Mary was alone in the lounge. She got out of her chair and while walking over the lounge fell on the floor.  Luckily she landed on the carpet without hitting any furniture as she fell.

I was alone (Maree in Toowoomba and Jess away for Christmas Day. I couldn't lift her so made her comfortable on the floor). Luckily, Becca and Raif Redding. were to visit, and when they arrived two hours later Raif helped to get Mary to the chair.  Lately it usually takes two people to assist Mary to get from one place to another in the house, e.g. Lounge to bed, lounge chair to divan, chair to commode, and lounge to sun room. It is no longer possible for me to manage Mary at home on my own.

Mary is sleeping longer during the day. However she sleeps soundly at night - from about 10pm to 6 -7 am next morning.  Appetite still good and bowels working well.

3.4 Points to consider:
What can we do to support the carer?
When change occurs, re-assessment is needed:
–what (Falls, Mini mental & General health)?
–strategies?
Assumptions and Understanding:
–what is real understanding?
–where is Ed at?
–what could we give him?
Isolation
Support systems
Impact
Societal/generational expectations of support
Is it time to discuss the next stage of care?
–what next?

What’s happening to Mary’s skin?
–integrity
–plan & action

3.4 Suggested Activities:

Timeline exercise; look at early life experiences as well as cultural, immigrant, environmental (depression, war, etc.), and how these impact an 80-year-old

Understanding what services are available, why they are available

What could Ed be linked to:
–councils
–community groups
–carer groups

(bringing people in to talk to the carers)

Review of services, and
understanding equipment

Journal Excerpt 3.5:

Thursday, 1 January 2009
Tonight I realised that Mary does not know for sure who I am. In a quiet talk with her she said that I am not her husband but didn't know who I was.

'No, you are not my father, he is dead.' Neither was she sure about Maree.  "She is in bed".  "Yes", I replied, "but who is she?"  "I don't know, she is a bit of a mystery", she said with a grin.

Later I pursued the subject, asking: "How many children do you have?" "Four", Mary replied. "Who are they?" "Ava-Leigh, Maree, Kaleb and Orlando", she replied after some hesitation. "There you are, so Maree is your daughter."  "So you must be my husband", she volunteered.

3.5 Points to consider:
–Grief process
–Remembering
–Acknowledging

3.5 Suggested Activities:
Reflect on the relationship between Ed and Mary at this stage:
Think about your own feelings in this situation
Think about your own response in this situation

Cycle of grief and loss
–theorists/theories
–identified stages
–application to practice

Journal Excerpt 3.6:

Mary often asks about her portrait, the one painted by Mrs Solesi in Bathurst in the mid 50's.  "Where is it?" "Hanging on the wall behind you." "How long has it been there?" "30 years"

Mary believes that "Lewy" takes the original away and replaces it with a copy. Similarly, with her other paintings hanging on the lounge room walls.

Often when Mary is going from the lounge to her bedroom at night she asks where is she going and why are we going "this way".  She will also ask which bed she is sleeping in tonight.

3.6 Points to consider:

Artefacts
–what are they?
–what is their importance?
–how are they used?

3.6 Suggested Activities:

Examine/ Discuss the effect on carer of conversations that are not conversations:
–repetition
–just managing the situation

i.e. effects on carer of caring approach/management

Journal Excerpt 3.7:

She asked about our wedding photo and whether I was her first or second husband and where have I been over the years when she has had "Lewy". I said that I have been here looking after her with others.

She asked if we were divorced and whether I had died.

Mary continues to have delusions practically on a daily basis.  See [sic] Lewy and his friend; sometimes animals.  "Saw" children sitting on divan in the lounge this afternoon.   Spoke to Mary about the possibility of going into residential respite.  Agreed best to look after Mary at home.  Matter closed.

Mary said that she saw Lewy on T.V. 'Border Patrol' - trying to get her painting through customs. However he was stopped and asked to explain.

Mary still asks [sic] "I want to go home."

"You are at home; this is our home 42 Wallaby Way, Warenda. It has been our home for a long time."

When Mary starts to walk from the lounge to her bedroom she often asks where we are going.  "Where am I going to sleep tonight?"

"In your own bed where you always sleep."

3.7 Points to consider:

Carer Communication with the person being cared for:
–importance
–anticipating (type and response)
–understanding of what is
  happening
Are social contacts being maintained?

Is respite available/being used?

What is the role of the family at this time?

Priorities: whose come first?

What type of support is needed and how could/should it be offered?

Why do you think the ‘matter’ is ‘closed’?

What are the short and long term effects of the ‘matter’ being ‘closed’?

Are the carer’s emotional/psychological/physical needs being met?

Timetravelling
–refer to historical assessment
–reiterate the progress of the disease
–communication

Artefacts
–what will help Mary recognise
–where she is?

Journal Excerpt 3.8:

Friday & Saturday, 13/14 February 2009
Giving Mary medication she asked "why are you keeping me alive?" "Because I haven't finished digging the hole in the back yard!" I replied. Later in conversation with Ellenna (carer) who said, "My husband wants to be buried, but I want to be cremated".  Mary chipped in to say: "I want to be cremated too".  "Well", I added, "I'll have to fill in the hole in the backyard!"

27 February 2009
Mary losing ability to clean her teeth.  I have to assist her or do it myself. Mary having periods of 'depression' - crying for no apparent reason and speaking in a way that is impossible to understand.  Mobility is getting worse. Appears she has 'gone down a peg'.

3.8 Points to consider:

End of life consideration
Grief process:
–present and future loss

3.8 Suggested Activities:

Discuss:
–What is end of life care?

Change (amplified loss of function)

–swallow (review diet):
*Task/exercise:
–develop a menu
 

Journal Excerpt 3.9:

Thursday, 12 March 2009

Mary not responsive this morning. Just wanting to sleep. Unable to shower, Lana gave her top and tail. Mary took Exelon OK but not able to eat - very sleepy. Not talking or responding in any way. Phone Greenhall who suggested I call an ambulance - maybe a semi-stroke. Spoke to Nadia James. - definitely not an ambulance - they don't understand her Lewy Body situation. Nadia suggested we get a specimen of urine (UTI). Tried but not successful.  Nadia will call again at lunch time.

Wednesday, 29 April 2009
Mary restless this morning.  No great recognition.  Had visito
rs Phillipa, Lana, Abbie Armstrong, Lailani, Maree, Kaleb, Odette. Have phoned everyone who may like to know.  Tried to feed by mouth - two small lots of yogurt.

Continuous flow of morphine.  Saline solution but no nourishment.  Water swap [sic] in mouth.

On Saturday, 2 May 2009
Mary passed away peacefully at 11 am.  I was present and Ava-Leigh, Maree, Orlando and Kaleb soon arrived.  We stayed til 2 pm except Maree. who stayed longer.  Kalab. began funeral arrangements with (Funeral Directors). As an organ donor Mary's eyes were accepted for research purposes.

3.9 Points to consider

End of life care
–start talking
–develop a plan
–medication

An Interdisciplinary approach
–develop a more concerted team
  approach
–active
–visible